New research shows New Zealand has the highest motor neurone disease mortality rate in the world and five times the global average.
The risk of developing the disease in New Zealand is one in 300 with more than 800 Kiwis diagnosed each year.
It is still unknown what causes the disease but the Director of the National Institute for Stroke and Applied Sciences, Valery Feigin told Mike Hosking it is more common in high income countries.
"The causes of motor neurone disease are not well known. High income countries have the largest mortality and prevalence rates."
"It is most likely that the burden of all neurological disorders including motor neurone disease will continue to rise. We have had an increase in the burden of neurological disorders from 1990 to 2016 of about 50 percent."
He said we are making "good progress" in the treatment of the disorders but not the prevention.
"Prevention and causes of neurological disorders many of them, if not most of them, there is still a big job to be done."
He said anyone who is above 40 could develop motor neurone disease.
However, Motor Neurone Disease New Zealand's Carl Sunderland told Kate Hawkesby there isn't an explanation for why so many New Zealanders are dying.
"There's no conclusive evidence of why. There could be a variety of reasons but it is quite alarming that we do have such a high rate."
The early diagnosis of the disease is incredibly important but Kiwis face extremely long waiting lists to see specialists."
"One of the issues you have got with motor neurone disease is that it takes a long time to diagnose, because to give someone basically a terminal diagnosis every other option has to be ticked off first. So getting in to see a neurologist early is the key."
A summit on brain health - is being held at AUT in Auckland today but, in general, Sunderland says there is not enough research into the disease.
"There is not that much research happening in New Zealand and there really does need to be a bit more."
He said the impacts of motor neurone disease is largely unknown in New Zealand.
"Unless you're actually effected by it I think the awareness is actually quite low."
"It is seen as a rare disease because the actual number of people living with it at any one time in New Zealand is reasonably low, compared to other disease, but the diagnostic rate actually is quite high - it's the third highest neurodegenerative disease that is diagnosed in New Zealand after Parkinson's and Alzheimer's."